WPinVA
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posted
I'm looking for information on the new protozoa that Fry Labs discovered (also called protomyxoa rheumatica, I believe) and I'm not finding too much. I've seen the interview posted on Better Health Guy and looked on the Fry website.
Does anyone have any more info? Specifically, what are the symptoms? Treatment? I'm starting to think this might be the missing piece of the puzzle for me and want to know more about it.
thanks!
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Do a search here.. it's all over the place.
let me know if you need help
You can also look under FL1953.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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WPinVA
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posted
Thanks, FL 1953 is a good suggestion. But I still can't seem to find a symptom list. If someone has one could you please post it? I'm trying to figure out if this could be causing my remaining symptoms.
And for treatment, I've seen low fat diet, Vita D, and some references to abx, but I was wondering if there is something a little more definitive?
thanks!
Posts: 1737 | From Virginia | Registered: Aug 2011
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here on lymenet: someone posted that he/she by accident took a 5 times higher dose of boron (in the form of borax dissolved in water) than intended, and fry bug was gone. (is supposed to be 1 teaspoon in 1l water, was 1 tablespoon) (one usually takes 2 teaspoon of that solution a day, makes 7 mg) But it is easy to get it back from somewhere else
Posts: 366 | From Europe | Registered: Nov 2008
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nefferdun
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Under Medicine and Treatment, there is 4 pages on symptoms. Dr. C published a list of symptoms and that is there.
The problem with the PR.org site listed is that the person disagrees with Dr. F's recommendation of a low fat diet. Much of what he says is false.
This often happens when people won't do what is necessary to get well - they disagree with science. This person is not in remission or even close to it. Those people who have gotten better and have gotten into remission are on the low fat whole foods vegan diet.
As long as I stay on the diet, I can get by without drugs and live a fairly normal life. If I stray from the diet symptoms return in days. You need to keep your fat intact to 15 grams a day.
Recently Dr. F has said arginine is not an issue, like he thought before. So you can get by with a vegetarian diet and eat some egg whites.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
yes, I was suspicious of that site, and lots of people here have reported getting better on the low fat diet.
Posts: 366 | From Europe | Registered: Nov 2008
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posted
No one can get rid of the protozoan by eating borax. ????? Need facts on matters like this when people post I feel. Was there tests under the microscope that the protozoan was seen before the borax and then not after the borax? Nothing scientific I personally feel.
You CAN go into remission... but you cannot, right now, get rid of this completely.
Sent a pm to you WP.....
No real symptom list out there from F labs/ Dr F. Beware of other lists please.
I've always had a babesia list of symptoms.... and I have the protozoan.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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nefferdun
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Protomyxzoa is similar to babesia. What I find is different is PR causes insomnia, bladder irritation, nasal congestion, tooth and jaw pain, muscle twitching, dry cough and stabbing nerve pain.
Symptoms similar to babesia are hot flashes, sweats, muscle and joint pain, profound fatigue, brain fog, vertigo, ataxia, cold hands and feet, abdominal pain, headaches, sporadic loss of voice, air hunger, agitation, and anxiety.
It can also cause fever, pain in/behind the eyes, poor capillary refill (discoloration of skin), scalp sores, and hyper coagulability.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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bcb1200
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posted
Neff...thanks for this. I'm trying to figure out if my remaining symptoms are due to Babs Duncani or P.R.
I had a Fry test and it came back completely negative with "no organisms observed". I am told this is VERY rare.
Definintely have Babs Duncani. But I also have twitching thus the concern for P.R.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
WPinVA, you're not finding more information because there basically isn't any. the single primary source is the interview with dr. fry that you already found.
maybe once there is some published research on this topic, we'll have an idea of what the clinical presentation (if any) might look like, as well as what treatment (if any) might be necessary/ effective.
Posts: 34 | From NYC | Registered: Mar 2012
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nefferdun
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posted
bcb, that is great that you don't have PR as it is incurable. Maybe you still have bartonella. Any insomnia or irritation?
The link I gave to Dr. C has the most information I have seen other than what was in F's interview (which isn't much).
Ivermectin/stromectol was very effective for me. It brought me back to health very quickly. I don't know why other people are taking anti-malarial drugs. They did nothing for my PR. In fact, it took off when I was treating babesia duncani. Plaquenil might be effective ( I could not tolerate it) as it kills parasites.
The low fat diet is critically important. I begin to relapse every time I get off track and eat more than 15-20 grams of fat a day.
Other things that seem to be helpful are boluoke/lumbrokinase and LipoPhos EDTA.
I emailed Dr. F's lab reporting my success with ivermectin, boluoke, LipoPhos EDTA, methyl cycle supplements and LDN. And of course the diet. They responded they have other patients reporting success with similar treatments.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Remember folks, This bugger, like Babs, like Bart, like Lyme, will give us INDIVIDUAL type symptoms. I've never had most of the symptoms that neff posted.
We all have 'weak' areas in our bodies and these microscopic buggers seem to find those spots. Thus, F labs and Dr F will not post any symptom list.
I will have completely different symptoms from the next guy and vice versa. It will also throw our bodies out of whack and have other things go wrong... ie... hypothyroid,etc.
The thing you need to look at is: Am I getting better on my current protocol or am I standing still in how I'm getting better. IF your standing still, then I would look into the protozoan for what is causing you to not get better.
You do not see anything posted/printed for info as there are all sorts of licensing laws that are dealt with.
When the time is right, there will be more information on this, but please know that there is a lot of studying, grants, conferences,etc going on. It isn't all about 'us' either. There are many different areas that this lab is studying.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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nefferdun
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posted
Hadlyme, what are your symptoms?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
My symptoms are and have always been, night sweats that come and go through the years.
Tingling/vibrations in my legs are my main thing. Fatigue that will come and go. Armour thryoid helps with that as my thryoid has gotten out of wack because of this.
I also will get the head swelling feeling, and have had mennigitis many times.
And that I'm low on B12 all the time. Come up Anemic alot. When I'm low on B12 I get a weird eye thing in one eye. Once I give myself a shot of B12 it goes away.
I think we've talked about some of this before.
We are all so different in this journey in how our bodies react to these buggers and how we react to the meds for them.
This surely is not a one size fits all disease.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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nefferdun
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We probably have discussed it more than once but I am brain dead and can hardly remember my own symptoms much less other people. Night sweats are a symptom Dr. C lists. I got hot flashes. Fatigue is a big one. Tingling vibration sounds like nerves and I get stabbing nerve pain. When not so severe it is a wierd feeling hard to explain but probably very similar to what you are experiencing.
I don't know how B12 would be related. I take hydroxy B12.
Another "symptom" is auto immune disease. I have Hashimoto's and suspect I may be developing Sjogren's. Other people have MS and ALS. I know you were worried about that. We do develop differently. Not everyone gets MS or ALS, thank goodness.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Hi All, I would like to raise the question, especially to those who have have/had fl1953 if this bug cycles/flares, or whether the symptoms are rather occuring constantly.
Might be an important point in order to distinguish babs and fl1953, since babesia flares.
Posts: 78 | From Germany | Registered: Feb 2012
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surprise
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posted
I like what hadlyme says about individually, it might not be the same.
2 LLMD's and myself believe I never had Babesia, but I tested low positive for protomyxzoa - which I treated with biofilm protocols,
and many rounds of parasite work. I did not and don't do low fat diet.
I do not notice any flairs. I have been off all treatment since January, and what I am left with is fatigue. I can do my life,
but fatigue is there. There is an LLMD who treats protomyxzoa and keeps retesting his patients until they test clean,
So I personally don't believe it has to be forever or not curable.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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WPinVA
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posted
I was just wondering the same thing about the reliability of the test. Mine just came back negative for the protozoa but high for biofilms and my doctor and I discussed the fact that perhaps the biofilms are shielding the protozoa.
Posts: 1737 | From Virginia | Registered: Aug 2011
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surprise
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posted
Interesting. I just pulled my test out, 1 colored page, and it says:
Detected: (Few) (and 1 very small highlighted are in the colored picture) Then it says:
'Few biofilm community-like structures and/or organisms were observed using a fluorescent DNA staining technology
These findings are suggestive of an unspecified infectious and/or parasitic disease.'
Frankly, that is not real clear to me! Right? Hmmm. So I had a little biofilm and probably parasites. I knew that.
Treat parasites and biofilm. And have something on board to kill the fallout of the biofilm.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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cottonbrain
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posted
Can someone please clarify for me: How do we know the protomyxzoa is harmful? Do 'well' people have it?
I too tested positive in the early days of the testing, first with "many" hemobartonella-like bodies, and a couple years later with "few."
Has anybody any knowledge of whether healthy people have this too? I am not trying to be cynical or doubtful, it is just that i have treated so many different organisms and am still sick. I have even used stromectol.
Where would you rate the protomyxzoa on the scale of most benign to most harmful of the coinfections?
Posts: 1173 | From USA | Registered: Nov 2007
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posted
I was working on a long answer to this post and erased it by mistake. Will come back later and retype it.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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WPinVA
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Sorry, Bea, I hate it when that happens. When you get a chance, I would love your take on this.
Posts: 1737 | From Virginia | Registered: Aug 2011
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The question of if any healthy people have this?.... Yes, but then they aren't healthy after they get it.
When Dr. F first got into this, he had normal patients that were healthy. They would slowly become ill... and had weird things going on. One was an Air Conditioner guy. Always healthy until he kept getting spider bites. Another one was a Vet that was healthy until many cat bites and flea/tick bites from her animals.
I feel that I 'look' healthy. But I have and will fight this for my life. Would love to have an answer found that would rid this of our bodies.
I think in the coming months, years, that we'll find out that there are many protozoan's that 'screw' our bodies up. Finding the combo of what will kill them is the million dollar question.
Cottonbrain, have you tried the lower fat eating? And are you worse in the winter than summer?
My personal opinion is that these protozoan's are worse than lyme spirochete. Ok, on a limb here... so don't throw stones at me, but I wonder, just wonder... if lyme IS treated within months of taking abx, and that it's these protozoan's that are left to treat and we think it's still lyme that we need to treat.
I hope someone out there finds the 'magic' formula for us soon! I've had the worse winter relapse that I've had in years. I am back in snowy cold winters compared to living in hot AZ. Heat did make me feel better. Oh.. that's another story.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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CD57
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posted
Hadlyme....wht caught my attention was the mention of the vet who got cat bites and flea bites and then slowly got sick. DIdn't she probably have bartonella? Does Dr F totally ignore this coinfection?
Posts: 3528 | From US | Registered: Apr 2007
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He doesn't ignore it, but when testing patients, he treats what he see's in tests. I do not know what this vet test results were, but it must have been whatever he treated her for.
These so called co infections, in my mind from what I've been hearing, are stronger than any lyme spirochete it seems. I think we have it backwards... lyme might be the co infection that isn't as strong as other infections/protozoans/parasites.
It's a whole soup of yuck I believe. And if our DNA can't fight it, whalaa... we are sick. MS, Parkinsons,ALS, etc... all autoimmune. It triggers the body into autoimmune. Again, my outlook on this all. I'm not a dr. nor scientist.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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nefferdun
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posted
I believe I got it along with everything else from the tick bite I had in 2006. I believe it came to the foreground treating babesia because I was taking the anti-malarial drugs with a lot of fat. It multiplies 100 times faster with lipids.
I don't notice a particular cycle like I had with borellia. I didn't notice a cycle with babesia or bartonella either. Symptoms can come and go though but that seems to be related to diet.
As this infection is incurable, I believe it is the worst one. I no longer have borellia flares (haven't in years). I don't have bartonella or babesia symptoms either - so they are in remission. There is nothing I have to do to keep them under control so I could say I am cured of them
But protomyxzoa comes right back whenever I eat too much fat. It is worse in winter too but all of my infections were worse in winter. I feel pretty well right now, but that can change.
Frankly, I hate the diet. It is so restrictive I sometimes wonder why I even bother to eat. It is getting me down lately but I keep on keeping on. . . . it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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